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Hello, my name is Kathryn and I am so glad you’re here! I am a military spouse and mother to two special needs kids. My hope is to encourage you to sing through whatever life brings your way! Read more here →

Diagnoses & Decisions: Updates and Crazy Scheduling!

Note: I may earn money or products from the companies, products, or links mentioned in this post.

I just want to thank everyone for the emails, cards, comments, messages, and kind words that were sent our way after my post: Diagnoses and Decisions. It was a very rough time there for awhile and it’s not over yet, but thankfully I am coming through the dark clouds and am seeing bits of sunshine here and there! There has been A LOT of changes and updates since I wrote that post a month ago, so I thought I would give everyone a quick update.

First, I would like to address a few things that may have been confusing in my last post:

1. A lot of people think that just because Adam looks ok or it doesn’t look like anything is wrong with him that he is fine. I have also had a lot of people tell me that they don’t think he has Autism because he makes eye contact or is social. Autism is about so much more than being social or making eye contact. Yes, those can be symptoms of Autism, but that does not mean that every child with Autism will have those problems. Every Autistic child is different. Each and every one.

Adam is very smart, he has good days and bad days. What people see in public or in pictures or videos is only a small part of who he is. There is so much more that goes on at home, and having people tell us that they think he is fine or that he is not Autistic in their eyes, hurts us as parents deeply because we have tried so hard to do our very best to help him through this and to get him to where he is.

The Psychologist told us that there is a lot of hope for Adam. If we get him into the right therapies and get him all the help he needs now then he will most likely grow up to be a very smart man and do well in life and in society. He may even have the Autism diagnosis taken off in several years if he improves enough. For right now, he needs the therapy and the help he is getting to get him to that point. We will do everything it takes to help him, and to give him the best chance at a normal life.

2. I got a lot of feedback regarding putting Adam in public school and when I read it all I realized I had not been very clear. To be honest, I have always been against public school. Some of you may not understand that, but for me it is a personal thing, one that I am not going to get into here. We really wanted to put Adam into a program at one of the local churches that went a couple days a week from 9-12. The problem with that is, they may not know how to help him because of his special needs.

The part of the public school we were looking into was putting him into a special education class so that he could get up to where he should be for his age, plus get free therapy. Then when he is ready for first grade, we would put him into a Christian school or maybe home school him. Public schools have teachers that know how to deal with kids with Autism and special needs, he would also be getting free therapy which would be a BIG help for us.

Since then, we have learned a little bit more about both programs and know a little bit more about the choice we have to make. Public school would have special education classes and free therapy. The preschools that are at the local churches may not know or understand how to help him, however I have heard that it may be possible to still get the free therapy through the public school system even if he went to the church school.

Right now our plan is to get him evaluated through the public school system, and see what our options are there. If we decide we do not like it, then we will try one of the preschools at one of the local churches here and see how it goes. As far as homeschooling, right now that is just not an option. Adam needs help from teachers who know how to help him. They will start evaluating in several months and we will find out more as he needs to be signed up by age three. We are praying for direction as his schooling is a very important decision.

Updates…
We finally got Adam’s therapy schedule under control and have been doing well getting back into the swing of things. It’s crazy how much driving I do and all the places I have to go just to get him the help he needs. Right now we go to Macon on Mondays for feeding therapy, Tuesdays we go to Perry for feeding therapy, and Wednesdays and Thursdays we go to Perry for speech therapy. I had to cancel OT because we were in the middle of switching to a new provider so that he could get Sensory Integration therapy. Tricare was all sorts of confused so until this week we were not doing OT.

Last week we had several evaluations. They both went very well, but it was so overwhelming and I was on major information overload. We had his evaluation for his new OT on Monday and I am very pleased with how knowledgeable they are and I think Adam is going to do well there. They are willing to help us in a lot of areas and I am hoping to start seeing a lot of improvements as a lot of his problems stem from the sensory issues. The only problem is they want Adam to come for therapy three to four times a week. I am not sure how we are going to fit it all in or do it with the gas money as it is a 45 minute drive one way, but we are going to try and see how it goes.

On Wednesday we had an evaluator come out to the house to talk about Adam’s ABA therapy. I am very pleased that we chose to go with Butterfly Effects and I think they are going to be able to help him a lot as well. They will be coming to our home up to twelve hours a week to work with Adam and help us. We also are going to be switching over to them for speech therapy so that will be one less place for us to go to.

So right now here is what our schedule currently looks like:

Feeding therapy 2 times a week. (Macon & Perry)

Speech therapy 2 times a week. (Perry)

Then it’s going to look like:

OT 3-4 times a week (Macon)

Feeding therapy 2 times a week (Macon & Perry)

ABA therapy 12 hours a week – including speech (At Home)

I am not sure how I am going to fit all this together, I also have my surgery coming up, and all the appointments that go with that, I still go to counseling two to three times a month, and any other appointments that come up in between. I can think of at least three I need to schedule right now. Speaking of surgery, I will be getting surgery done on my right arm on September 25th. I am hoping to write up a blog post about that soon! I thought it was Carpal Tunnel Syndrome, but it ended up being Cubital Tunnel Syndrome. Go figure!

Since that last post we also had some new developments with allergies. Adam went to see an allergist and we found out he was allergic to MILK among other things such as cats, dogs, and every grass, leaf and tree in the local area. We were very concerned about the milk allergy because whole milk is where he gets a lot of his calories from. We tried switching to several different milks (Soy, Almond, and Rice), but Adam would not drink any of them.

After two weeks, I went to his pediatrician and told him there had been no change after we dropped all dairy from Adam’s diet, I also told him I wanted to get a second opinion from another allergist. He told us that we should start him back up on the milk since there was no change and the blood test revealed no allergies. The calories Adam gets from his milk are a huge part of what’s helping him grow and gain weight.

We were also told by the allergist that Adam has allergy induced asthma and he wanted to put him on breathing treatments and an inhaler. Adam has had problems with a cough since he was 6 months old and has been on allergy medicine to help ever since. However, I am not sure it’s as bad as asthma because he doesn’t have trouble breathing. We are currently getting a referral for a new allergist and are hoping to get a second opinion on all his allergy related problems.

As far as the decisions I made in that last post about blogging, I will tell you it’s been very hard to stick to them! The week following that post I had the most traffic I had had in a long time, more emails then ever before and lots more inquiries to do business! So I made another couple of decisions. I decided to keep on doing advertising. I don’t actually have to do anything but approve the ads as it is all through Passion Fruit and they do all the work, so I figured that was one thing I could keep up with.

As far as reviews and giveaways, I had a few I had told people I would do before so I am keeping my word. I figured that doing one or two per month would be do-able so I am scheduling months out to get everyone in. I also decided that since we are having a hard time right now financially that it would be good to take on some opportunities that would give us some extra money. The Lord has been good and has brought several good things my way and I am excited to help out my family in that way and in any way I can.

I also had a friend offer to help me so she has been helping me with my emails and answering different inquiries. That is a huge blessing because even though I had said I wasn’t going to be doing it for awhile, they still keep on coming! It’s hard to not let the emails get piled up, but with my friend’s help I have been managing rather well lately. Also, now that my husband is out of training there has been a lot a more time for him to help me. Once a week, usually on the weekends he gives me several hours of alone time so I can focus just on blog stuff. That makes a huge difference and I am getting more done!

Thank you all again for the kindness and blessings you all have sent my way. God has used so many of you to touch my life and to help me make it through one more stressful, busy day. I appreciate each and every one of you.

I had just posted the other day about the misconceptions that many have about Autism…like a child looking normal, or being smart or social. It can be very frustrating when people still know so little. I understand your feeling on the school issue as well…I would love to homeschool my son, or even send him to private school…I know not all public schools are bad, but you definitely hear more about the bad, but unfortunately, I know my son needs more help than I can provide him at home (not to mention the social interaction) and private schools are just not something we could afford. I will continue to pray for you and your family…we have been on this Autism journey for three years now, and while the struggles never go away completely of course, just know that after the initial shock and adjustment, it will get a bit easier at least!!

Hi Randi,
Thank you so much for commenting! I would love to read that post if you don’t mind about the misconceptions. Our family members are having a hard time with it and I don’t think they see it. Thanks for your encouragement I am glad to know I am not alone. I agree about the public school thing I always here more bad than good especially after what happened recently, although I know that could happen anywhere…It’s still scary. Thanks for the prayers I appreciate it!

I hope the schedule works out to what is best for your family. My youngest was getting OT and PT for a year and that was 45 minutes away. I was having to do that twice a week till we could get it where he was going onky one day a week and having both therapies on the same day.

I am glad you guys are able to get your son the help that he needs. That always makes the best difference.

You all are in my prayers. I hope your surgery goes well and I will continue the prayers.

Hi Nikki,
Thanks for the comment! The schedule really never works best, we just kinda plan our lives around it. Not everything, but almost… I am glad we are too and shouldn’t complain. They are helping him so much. Glad you were able to get your schedules fixed I know how much of a help that can be. Thank you for the prayers I appreciate it a lot!

I am so glad I came across this blog – I am also a military wife with a young child with special needs. Reading about Adam is like reading about my own son – we’re are just starting our journey but he doesn’t eat, he doesn’t talk well, he’s sensory seeking, and possibly PDD-NOS. We also live in GA and go to the Marcus Autism Center in Atlanta. We have decided to enroll him into special education preschool with our local school district because they can provide a lot of help that I can’t get otherwise. We wanted private school but private schools are not legally obligated to provide special education services. Tricare is a pain – they get confused every other week and I’m just trying to get the help my son needs! Thank you for writing! It makes me feel like my family is not alone in all of this. And prayers to you and your family!

Hi Jami!
I am so glad you found my blog. We special needs moms and military wives need to stick together! Where in Georgia do you live? I hear you about tricare, I can’t tell you how many days I have fought with them, and all the hundreds of phone calls I’ve made to make things right. Thanks for commenting and for the prayers it’s nice to know I’m not alone too – that’s why I blog about it! 🙂

Hi there!
I have a 14 year old son on the autism spectrum. There are many things that you can do to help your son. I read your post and it made me think of our situation. I kept my son in private preschool when he was younger. Looking back, I realize what is important. Make sure you keep your son engaged in the world. Join him where he is by engaging in his ineterests. Do playdates, even if they are difficult. I know when your schedule is busy with therapies, it is the last things you want to do, but it is the first thing you need to do. Play skills do not seem so necessary, but it will increase his ability to get along with others and be able to have more appropriate interactrions with peers as he grows, There is a wealth of information on alternative treatments that are beneficial. The gluten free/casein free was a huge improvement for my son. he used to tantrum and have such difficulties. Then the diet helped him feel better and act better. He started being able to learn. Play is very important for the skills that it helps to develop. Good luck and email me if you want any advice from someone who realizes what is important in hindsight, plus I am getting a masters in special education and always want to learn more about autism.

Hi Laura,
Thank you so much for sharing and for your tips! We try to do play dates as much as possible in our busy schedule, it is helpful both for mommy and baby! 🙂 Thanks again I appreciate the advice.

So now I stumbled upon some of your previous posts that entail your son as he grew up. I’m a speech language pathologist, and I work with many children who have ASD. We also have a son who has a sensory feeding disorder! He’s not on the spectrum, but he is very unique when it comes to eating specifically. We have done OT, ST, and soon an intensive feeding therapy in central Florida to address his lack of nutrition. I applaud you for this post! I have many moms and dads who may need to read your posts. I may direct some of them to your blog to help them find hopefulness in this path of crazy schedules and adjustments to what we do for our children with special needs. Virtual hugs, Jenn

p.s. Now I need to know where you are in 2015? I’ll check on more posts. 😉

Wow has your son ever been diagnosed with anything else? Autism? SPD? My son has now been officially diagnosed with autism, SPD, apraxia of speech and a feeding disorder. He’s been in therapy since he was 12 months old. He is still in OT, Speech, and Feeding therapy. He also does ABA for autism. They all work on his feeding issues, but this year we have seen the most improvement. There is hope!!